Hi. I'm Steve - you've found my blog. I talk about my experiences with dialysis and transplants all while trying to live a "normal" life. A young man's view - tinged with humor.

The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Wednesday, December 12, 2012

A Teardrop In The Snow

There's no snow right now.

I'm really okay with that - be it global warming or whatever apocalypse that'll kill us all someday - I'm okay with it for now. I've spent 30 plus years dealing with the snowbanks, the ice, the wind, and the chills. It's funny; the cold never used to bother me - before I got sick. I would be that asshole in shorts and maybe (distastefully) wearing socks and sandals. But my kidneys finally died after years of not being treated, nor illness detected and suddenly the anemia that accompanied a lack of kidneys set it, and cold chilled me to the bone. It's been 10 years since then; I still remember the Christmas of 2002 - though it's literally a visual and mental blur in my mind.

My vision had slowly been going dark and blurry during the month of December in 2002 - and the previous months had not been good for me either. I felt as if my mind was coming apart, and I felt like my body was finally ripping. I didn't have any answers; sure, I was overweight. Sure, I didn't sleep well. I drank occasionally, but not anywhere near the level of other my age. I smoked socially, too. I always figured I'd have some problems, but this was more. I was being torn apart. My mind was slowly going as well - my paranoia was out of control, my rage unquenchable and all my thoughts disjointed. Depression, disillusion - these were mild adjectives compared to the war in my head.

When you're circling the drain, sometimes you refuse to believe it. You just think that you're a gigantic screw-up, and everything that is happening is your fault, because of some stupid thing you didn't do: didn't take care of yourself, didn't do your chores, didn't pay your bills, didn't go to school, didn't live up to your potential, didn't follow through on your commitments. You never think that you're actually physically dying.

You just think that you're a big waste of space. A stain, perhaps, on the large wall of life - and no one but you notices or cares. It's a big wall, man, and it's full of stains and your little mark ain't gonna mean shit.

So, there I was... circling the drain, and denying it. Denying it when my eyes began to get dark and blurry for no reason. Gotta be an eye infection like Pink Eye or something.... Shaking uncontrollably .... probably because I eat like crap and I don't sleep well at night.... An odd pain in my back when I pee sometimes ... It's only been happening recently... maybe I have some kind of infection. Get some anti-biotics or something... get some cranberry juice...

A million little excuses, and a miserable man for the holidays. My life was in shambles. I'd let my current semester of school go to hell after enjoying several decent semesters back. I just didn't care.

And so I sat, shaking violently, with a scowl on my face at Christmas.

I've told this story one thousand times before. Lost my vision. Went to see a doctor on New Years Eve. Rushed to the hospital. Stubbornly sat in the hospital, waiting for them to give me a pill that would fix things, and let me on my way.

I never made it to the expected parties that night. Instead, my life turned into the impossible. Sometimes it still feels like some crazy "Special Episode" of a sit-com, where the protagonist learns some great, huge, life altering lesson... and then in the next episode, proceeds like nothing changed.

Only, for me, there's never been a next episode - as my life changing event will never, ever go away.

Needless to say, I lived. I did dialysis. My father donated a kidney to me, and we kept that going - despite the injuries it received in another surgery - for three years. I met the woman who because my best friend and my wife. I did dialysis again. She taught me how to live, love and laugh in the face of so much despair. We faced the future together - and our second miracle came only a year ago.

Learning to live again, in the world, is a lot harder than you'd think. In a perfect world, you'd think that you'd get the transplant, and suddenly - all is right with the world. But what I failed to think about is that life, on its own, is hard for all of us! That doesn't go away when the big thing you deal with is suddenly kept at bay. I have to admit - at times, it hasn't been easy to settle into "normal life" over the past year. I'm still gaining my footing - I'm still growing as a person, and I'm almost learning how to walk again. At 34. It's kind of scary sometimes. I'm kind of scared sometimes.

But that's life. And though the weight of it sometimes feels like it's crushing me, sometimes - just sometimes - it occurs to me that the weight of MY life isn't crushing me, but just holding me up. The measure of my life so far feels reflected to me in the company I keep. Heh, I seem to know a lot of people. A lot of people seem to know me - and everyday, I'm touched by them. In so many ways. I can be a sweet, caring person - giving of myself, or as much as I can give - sometimes. Other times, I can seem wry, mad and curmudgeonly. Everything seems to piss me off these days, and I'm always complaining about "the kids on my lawn." It's often just a deflection from my soft and sentimental heart. Anyone who really knows me knows how much I care about things - from the stupid and the mundane, to the important - like friends and family.

The lives of my friends and family are what keep me chugging along on this Earth. You're all so varied and different, and on so many adventures. Some similar to mine, some completely different. But, holy cow, what a swath of people I know - just the different walks of life - different occupations, different ages, different stations and places in life - differences of opinions and differences of some values.... similarities in zest for life and for love.... sometimes, it's too much to comprehend.

Then there's the life and love of my Jordan. It's crazy; for all the words I can write and rambling I can do on a million subjects, when my words turn to my wife - I often feel like I'm stumbling over my feet... or my fingers. My heart turns to this... vast machine that I can physically feel pumping in my chest, and the space behind my eyes turns blindingly bright white. My pulse quickens, and a lump develops in my throat and in my chest. My breathing gets rapid - and I just can't find... IT..... the words. I hear angels in my head, singing the choruses of songs I wish I wrote, and heavenly beings playing ungodly instruments in the most beautiful intervals and chords that I can imagine. I can't hold it in - I can't capture it. It's totally stuck inside my head, and I stumble. Anytime I try to write the words to convey the thoughts... they feel like a cheap imitation of the epic in my head. Every time my fingers try to re-create the music, it feels like an insult in 12 intervals. I fail...so hard... and yet... I've succeeded beyond any kind of understanding. The way she touches me, grabs my hands, looks at me - and understands this blabbering idiot of a man.... well... I... I'm here. All these words, and I still... feel... so... far... from what I feel.

Love's different for everyone. But my love for Jordan... maybe it's only for me to know, and for me to spend the rest of my life trying to show only her. Whatever it is... it's the single greatest thing I have ever known.

So, later on this season, as we drive around my old stomping grounds, and look at the Christmas lights, hung with care, and I hold her hand - I think I'll only shed one teardrop in the snow... and not for mourning my illness, or what it was like to live under that - but to be thankful for all the love I'm surrounded by daily. To remind me of what I always wanted, growing up in a small town where people still hang their lights with care - to remind me of Christmas's past - and to Christmas' future. I sure hope there's snow in Christmas' present.